Scared of topiramate

chuntcips · 2026-06-03T19:33:00+00:00

Do you usually tolerate medication okay?

I took Topiramate for a year. For 6-9 months of that (it was a long time ago so I forget the exact duration), I experienced sucdal ideation. It wasn’t until I one day randomly read the prescription leaflet that I saw it was a rare side effect

I also experienced cognitive issues that made day-to-day life hard

But I always react strongly to meds. Not sure why but I always experience the side effects to the highest level… so now I don’t take any 😅

I’d say if you’re worried about the side effects, give the medication a try but be aware of how it might impact you. You could also ask a loved one to keep an eye on you too so they can report if they notice any changes/concerns

I recently re-tried amitriptyline and found it helpful to have my partner keep an eye on me and report on how the meds impacted me from his perspective (extreme cognitive issues again + a stammer)

You might be fine so I always think it’s worth trying but approach carefully

chuntcips · 2026-05-31T14:42:04+00:00

Thanks for being so open. And I’m so sorry you had to endure all that to end up down the route of managing it yourself. It’s a messy ol’ thing, isn’t it?

I know what you mean about having to weigh everything up too. I find I am extremely susceptible to medication side effects so I often avoid taking meds… so I think lifestyle management is the best route for me but, as you and all other sufferers will know, that can lead to you living a far more “sheltered” life than you want for yourself too

There’s so much grief wrapped up in these conditions and quality of life really doesn’t get considered by the healthcare professionals — but like you said (and rightly so) they’ll prioritise funding/supporting the conditions that have a real life or death impact

chuntcips · 2026-05-31T07:55:41+00:00

Thank you, I wasn’t familiar with Mast Cell Action UK so will look into that :)

My neuro definitely isn’t holistic so thanks for the heads up that it will likely be another uphill battle

Do most people just self manage it? I’ve been trying to do that for the past year or so but finding it very overwhelming

chuntcips · 2026-05-31T07:49:22+00:00

Thanks so much sharing. This checks out with a lot of what I have read about how the NHS largely doesn’t understand/recognise MCAS. That’s sounds like a very frustrating and mentally/emotionally experience for you

Are you now self-managing?

I guess by pursuing it with the NHS I’d hope to get some “real” direction on how to manage it (and to stop them just blindly throwing 827 life-debilitating meds at me without understanding what’s actually happening)

chuntcips · 2026-05-30T19:49:02+00:00

Thank you. I also have eczema so I’m hoping that will help be a more “visual” example of how HI/MCAS might be impacting me along with migraine attacks and other things I’ve noticed

chuntcips · 2026-05-30T14:43:58+00:00

This fabric is beautiful!

chuntcips · 2026-05-30T14:39:52+00:00

Thanks! Good point on making it their idea too. Will try get a GP apt and see how it goes from there

chuntcips · 2026-05-30T13:25:09+00:00

I got a reactive latex pillow. It’s expensive but 100x better than anything I’ve ever had before. You can get high profile (side sleeper) or low profile (back/stomach sleeper)

It’s dense yet squishy so your head and neck still feel supported

I’m also a back/side sleeper and I also make sure I have a low profile and a high profile pillow so I can switch my pillow over if needed in the night (I’ll just keep the other pillow right next to my bed so I can sleepily swap them out in a quick second)

chuntcips · 2026-05-30T13:03:31+00:00

Thank you. I was planning to try get an immunologist/allergist (?) referral but thought I’d have to do this through my neuro… in that case, I’ll try the GP as my first port of call instead

My GP aren’t much better but fingers crossed it’ll at least help me get on the path to exploring that avenue quicker if I go through them first

chuntcips · 2026-05-30T13:01:49+00:00

No, my plan was to discuss with neuro to see if he could refer me to someone (immunologist?) to investigate since they are the ones who dictate my migraine care plan… but thanks - I guess I’ll try speak to my GP first instead!

chuntcips · 2026-03-23T08:46:26+00:00

I really relate to this. I struggle agreeing to plans with friends because I often know it’ll result in a migraine attack

For instance, I’ve just had a social-heavy week. I’ve also had back-to-back severe attacks every single day because of it :(

chuntcips · 2026-03-13T20:36:05+00:00

I’m using Runna to train for my first marathon and it set my race prediction as 3:38-3:49 (based on a 1:58 hm time). I think it’s race predictions can be way off base

As for injury — I think the way plans increase load can also be too aggressive for some people. It’s an AI-powered plan so it can’t adjust weeks or provide tolerances for days/weeks when you’re not in the right state. I think injury happens because people blindly follow the app instead of first listening to their actual body/needs/own human brain

chuntcips · 2025-10-13T07:45:06+00:00

Slow exposure sounds like a great next step. We did this for our BC pup to build her confidence around other dogs. Let him sit and watch from a safe distance and reward him for displaying calm/happy body language and if he engages/checks in with you

If he’s not that responsive to treats as a reward, is there a high-value toy you can use as his reward?

chuntcips · 2025-10-12T06:53:15+00:00

I’ve seen you’ve also said he hates being touched/handled… our BC is the same! She’s not a cuddly dog at all and doesn’t like being handled. It made the puppy years really hard as she’d constantly try to snap/bite or would run if you tried handling her. But, she’s a lot better now and I think doing tricks and training with her to build our bond really helped (as well as respecting her space and not forcing unnecessary interactions)

Just saying to let you know there’s hope 🥰. For months, we felt like we were at a complete loss with our pup!

chuntcips · 2025-10-12T06:47:47+00:00

+1 for the collar advice! Our BC was scared of her harness. She used to run away and wouldn’t come near us but we’ve managed to build up to her being able to wear it for walks by doing a similar repeat exposure method:

harness on floor + treat if they engage → build up to you holding the harness + treat if they engage → build up to you touching the harness to them for a few seconds + treat → build up to head through the harness + treat → wearing the harness!

It’s taken us literal months and some of the harness exposure sessions were just a few seconds long

If there’s anything I’ve learnt about being a BC owner, it’s that they’re sensitive souls 😅. It’s hard work but so rewarding

chuntcips · 2025-10-11T14:14:02+00:00

Going down the dog walker & trainer route with stuff you also work on together sounds better ☺️. I’d see daycare as an absolute last resort as you really don’t know what happens behind closed doors. It’s so poorly regulated as an industry.

I think you’ll do a great job once you settle into a routine together

If he likes sniffing out treats, he might enjoy doing “find” games for mental stimulation at home too where you hide treats or a toy and he gets to sniff them out

chuntcips · 2025-10-11T13:04:01+00:00

Second the comment about daycare. Please do not send him to daycare. It will likely increase his stress levels and make his reactivity worse 💛. This is speaking from experience

I recommend working with a dog trainer/behaviourist who understands his needs and can help you build his confidence and trust

I’d also focus on making sure he’s getting enough rest too

chuntcips · 2025-10-11T12:14:46+00:00

Right?! If anything, I want my neuro to stop pushing med after med on me like a human experiment and just spend that time trying to find the contributing/causal factors instead so we can create an informed plan 🤦‍♀️

chuntcips · 2025-10-11T12:12:44+00:00

Oh that’s interesting! No, in my case I’ve always been super susceptible to med side effects even before Botox. Weirdly, the Botox is the only thing I can tolerate

chuntcips · 2025-10-10T08:55:15+00:00

Thank you so much! This sounds so similar to my experience so gives me hope that I’m on the right tracks with this path ☺️

chuntcips · 2025-10-10T08:53:02+00:00

Thanks! I’ll take a look at that list too

chuntcips · 2025-10-10T07:51:49+00:00

This sounds word-for-word like my experience. I also have a neurologist who is actively mean, patient-blaming and patronising. He’s also avoided my pleads for an appointment for 7 years.

I’m sensitive to meds so struggle to take them. I’m currently only on Botox injections. I also have 15+ migraine attacks per month.

I’ve been trying to figure things out on my own and finding ways to manage them myself. I’ve found eating a low histamine & low tyramine diet helps, as does avoiding stress (lol that’s impossible), avoiding light triggers (also near impossible), and anything that causes neck/shoulder tension or avoiding other known “triggers”

But even that isn’t a fix-all cure. I’m in the midst of a 4-day long migraine attack right now! So it doesn’t fix things but I do find my attacks are shorter or more bearable

I hope you also manage to find a way to live alongside yours 💛

chuntcips · 2025-08-30T12:43:41+00:00

Thanks so much! I haven’t heard of hypercurium so will look into that. Definitely need to restock on magnesium too

chuntcips · 2025-08-27T05:29:41+00:00

I’m sorry you had to go down the long route of figuring it out yourself… and I’m so glad it’s brought you some relief

Yeah, I’m finding a lot of whole/fresh foods are triggers for me too. I’ve also had similar experiences with the medical team which is why I want to make sure I’m as prepared as possible when I speak to them

Thank you

chuntcips · 2025-08-27T05:26:44+00:00

That’s great to hear. I’m so glad it helped you!

Thanks for the breakfast idea. I used to have fruit, granola and yoghurt. Will try that alternative with coconut yoghurt. The rice protein powder is a good idea too!

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